Marriage

When our daughter was born and we discovered she had a craniofacial birth defect, it was earth shifting. Everything I knew and thought I knew changed. I recall not truly realizing what it meant. She was born without an ear canal or outer ear, a craniofacial birth defect called Atresia/Microtia. What is this? What does this mean?

The reality sunk in all too soon when she was wheeled away from me to have her newborn hearing screening done. One side wasn’t testable because it was closed. The other side? She failed it. Twice.

The Shift

Becoming new parents is huge. Becoming new parents of a special needs child is something else entirely. Capt and I experienced, simultaneously, the fear that accompanies a calling: “Am I strong enough? Are we?” Something unlocks inside your soul, and you slip uncomfortably into one of two places: strong enough, or devastation.

I watched her every second for a flinch, a twitch, something to show me she wasn’t deaf. In those first few days, the flinch never came.

Exhausted from typical newborn baby struggles coupled with the stress of creeping fear, I left her and Capt in the room to go put pajamas on and brush my teeth. I looked up at myself in the mirror, mid-tooth brushing, with a vision of myself as the parent of a deaf child. I cursed myself for not paying closer attention in my college sign language class. And then I cried. Hard. The kind of cry that comes from a place in your heart you’ve never been. Holding it together wasn’t available to me in that moment. There was nothing for me to hold together. I was empty. All the thoughts and fantasies about the child I had with the man I love and call my husband circled the drain with the water in my sink. This isn’t what I signed up for. How did this happen? Why? What now?

What rose out of that huge empty space, the place where who I thought I was, who I thought WE were existed untouchable, is the marriage we have now. A fundamental shift occurred after the birth of our daughter and the weeks of uncertainty that followed. United in a shared experience of fear, longing for might-have-been, and the vast unknown that lay ahead, his was the only hand I could see and feel in the dark, questioning space I found myself in. “Help me. I’m falling apart, and I can’t find any of my pieces.” Time after time in those first weeks, I would reach out blindly and his hand was always there. I don’t know how he did it, because I know he was falling apart too. He carved out a piece of himself for me to gather strength from. I know it must have been painful.

There’s something that happens to you when you no longer have the luxury of wallowing. The shift happens. It’s about standing in the new space created by the circumstances you find yourself in, and making it yours. This is what survival feels like.

In following years of learning what this meant for all of us, we found our way beyond survival and began to carve out the relationship we have now in that formerly empty space of fear and longing. What can arise out of the darkest time is sometimes the most important and changes the trajectory of your life. The child we have now; the strong, happy, loving, hard-of-hearing (not deaf) girl whom we wouldn’t trade or change for anything, the integration of her and her unique needs into our lives (the fear is gone!) and the relationship we found in those early days of parenting made us the family we are today.

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I *knew* when the church doors opened and the music started to play I was in the right place at the right time with the right person. The last 16 years hasn’t always been easy, but it’s always been worth every minute.

The Day I Knew He Wouldn’t Leave.

At that point, we were still kind of tiptoeing around each other. Neither one of us were the “fall fast fall hard” types, and I wasn’t sure if I could REALLY honestly believe that he would be there when I needed him. I’d been disappointed so often before with others bailing out or making an excuse when I was having a hard time, I had trouble even contemplating he might be different. So, I kept asking him, “Are you coming with me?” And he would say, “Yes.”

Then he got sick. Like, barely lift his head off the pillow sick. The fear I was going to have to go through this incredibly emotional experience without him was growing. All I knew was I really wanted him there. We had only recently said, “I love you,” and I was hoping against hope he was the last man I would say it to.

I struggled with myself in the days leading up to the funeral. He had been passing all my little tests thus far. Tests like, “how will he do when he meets my parents?” And, “how will he do during my family Thanksgiving?” With flying colors.

So here we were. One of my most beloved grandparents was gone. I missed her terribly, and really wanted him to be there. I knew I felt stronger with him near me.

The morning of the funeral came, and he showed up at my apartment, wearing a suit, eyes watering, stuffy nose, miserable, and there for me.

It was a turning point for me. After that I really let my guard down with him and allowed myself to fully trust his word. He was there for me. He didn’t try to run when things got hard. No excuses why he couldn’t be there. He’s been there ever since, and I’m so thankful.